We're facing the future with a smile

IT WAS during a routine scan in March 2010 that Rachel McDermott and her husband Johnjo were told their daughter Emily might be born with a cleft lip. “We found out at the 20-week scan,” says 32-year-old Rachel.

“Emily had her lip repaired and rhinoplasty on her nose because when she was born her nose was flat on the left hand side and therefore asymmetric.

“They had to do a lot of work behind the nose to support it because there wasn’t any tissue,” says Rachel, a teacher from Tring in Hertfordshire.

“She still has quite lumpy scar tissue on her lip so we are waiting to see how that settles and whether she will need another operation. She also has some problems with her teeth. By the cleft site it has grown in a T-shape and she has a gap where one tooth hasn’t come through. So she might need a bone graft when she is around seven.”

Those with a severe cleft palate face a number of challenges from birth until their late teens.

Professor Bill Shaw, a director of The Healing Foundation for Cleft Research, explains: “Many people think the operation in babyhood is the end of the story. In fact that’s only the beginning because they can have many visits for speech therapy, orthodontic treatment and also for hearing problems.

“Children with cleft palate can’t ‘pop’ their ears as they swallow to clear them and are prone to middle-ear infections.”

The research programme hopes to trial surgical techniques which will cut the number of procedures required to correct the condition.

“The bone graft is done in children who are about nine.

“The bone has to allow teeth to grow through it so mostly it is taken from the hip because inside there is plenty of softer bone that is rich in cells,” says Professor Shaw.

“When transferred into the mouth it starts to behave like a jaw bone almost immediately. We would like to use some of the new emerging products such as artificial bone so patients don’t need to go through a painful hip operation.”

Rachel believes more needs to be done to address the psychological impact of having a child born with a cleft.

“When Emily was born I knew she would look the way she did.

“I was bowled over by how amazing she was. I know some women have issues bonding with a cleft baby but luckily I didn’t experience any of that.

“Sometimes people do say silly things when they see her but it hasn’t stopped us getting out. We have an amazing daughter and after everything she’s been through she’s an inspiration.”

For more information about taking part in the research programme visit www. cleftcollective.org.uk